- Email: [email protected]
Symptom Experience in Korean Patients with Liver Cirrhosis
326
Journal of Pain and Symptom Management
Vol. 31 No. 4 April 2006
Original Article
Symptom Experience in Korean Patients with Liver Cirrhosis Soo-Hyun Kim, MS, RN, Eui-Geum Oh, PhD, RN, Won-Hee Lee, PhD, RN, Ok-Soo Kim, PhD, RN, and Kwang-Hyup Han, PhD, MD Quality of Cancer Care Branch, Research Institute and Hospital, National Cancer Center (S.H.K.), Goyang, Gyeonggi; Yonsei University College of Nursing (E.G.O., W.H.L.), Seoul; College of Nursing Science (O.S.K.), Ewha Womans University, Seoul; and Department of Internal Medicine (K.H.H.), Institute of Gastroenterology, Yonsei University College of Medicine, Seoul, South Korea
Abstract This study was done to examine the level of symptom experience, and symptom variation in relation to demographic and clinical variables, in Korean patients with liver cirrhosis (LC). Symptom experience was measured using a scale developed by the researchers through a literature review on LC. Participants were 129 patients whose mean age was 53.6 (standard deviation [SD] ¼ 9.28) years. The results indicated that (1) overall symptom experience was relatively low (mean 41.67, SD 24.71); (2) the main symptoms needing a management were fatigue, abdominal distension and/or peripheral edema, and muscle cramps; and (3) among the study variables, the severity of LC (P < 0.001) and the number of hospitalizations (P ¼ 0.014) showed a significant relationship with overall symptom experience. These results suggest that symptom assessment requires a multidimensional approach and that it is imperative to consider disease severity in developing tailored symptom management programs for Korean patients with LC. J Pain Symptom Manage 2006;31:326--334. Ó 2006 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Symptom, experience, liver cirrhosis
Accepted for publication: August 31, 2005.
abuse. According to the World Health Organization,2 there are estimated 350 million carriers of Hepatitis B and 170 million carriers of Hepatitis C throughout the world. Seventyfive percent of carriers of Hepatitis B are Asian. In Korea, liver disease is the fifth most common cause of mortality; it is first for men in their 40s.3 Three million people (5%--6% of the population) in Korea are infected with Hepatitis B, which is the main cause of LC, and in the 1990s, the incidence of alcoholic LC increased rapidly.4 The mortality from liver diseases in Korea is the third highest in the 31 countries in the Organization for Economic
Ó 2006 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
0885-3924/06/$--see front matter doi:10.1016/j.jpainsymman.2005.08.015
Introduction Liver cirrhosis (LC) is characterized by fibrosis and conversion of normal liver architecture into structurally abnormal nodules.1 It originates from viral infections and/or alcohol
Address reprint requests to: Soo-Hyun Kim, MS, RN, Quality of Cancer Care Branch, Research Institute and Hospital, National Cancer Center, 809 Madudong, Ilsandong-gu, Goyang-si, Gyeonggi-do 411769, South Korea. E-mail: [email protected].
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
Cooperation and Development.3 These epidemiological data indicate that LC is a significant chronic disease in Korea that must be addressed by health care providers. Patients with LC experience nonspecific symptoms such as lack of appetite, dyspepsia, nausea, or weakness, which initially do not directly indicate early liver disease.5 However, as the disease progresses to an advanced stage with complications, patients can experience severe symptoms such as fatigue, itching, abdominal distension, peripheral edema, dyspnea, right upper quadrant (RUQ) pain, or changes in the level of consciousness.6 These may lead to physical as well as psychological and functional limitations that profoundly decrease health-related quality of life (HRQL) and well-being.7 In a study by Younossi et al.,8 patients with LC had similar negative level of HRQL compared to patients with chronic obstructive pulmonary disease or congestive heart failure. Marchesini et al.9 found that in patients with cirrhosis, HRQL was seriously impaired and associated with particular symptoms such as muscle cramps and pruritus. Although previous studies suggest a relationship between symptom experience and HRQL, information about the level of overall symptom experience and the factors relating to symptom experience in the patients with LC is limited. Despite the high prevalence and mortality of LC in Korea, research on symptom experience has not been reported for patients with LC. Exploring symptom experience in patients with LC can provide essential information to develop an effective symptom management program, which would contribute to ultimately enhancing patients’ quality of life. Lenz et al.10 suggested three dimensions relevant to symptom evaluation: (1) frequency with which the symptom occurs; (2) intensity of the symptom; and (3) the degree of distress for the symptom. Portenoy et al.11 also emphasized that symptom frequency, intensity, and distress together yield clinical insight that cannot be captured by a symptom checklist alone. Thus, there is a need to use a multidimensional evaluation of symptom experience in patients with LC. The purpose of this study was (1) to examine the level of symptom experience in as to frequency, intensity, and distress; (2) to analyze
327
symptom variations in relation to demographic characteristics (age and gender) and clinical variables (severity of LC using the Child-Pugh classification, the etiology of LC, the status with or without hepatocellular carcinoma [HCC], and the number of hospitalizations) in Korean patients with LC.
Methods Study Design and Participants This study used a cross-sectional, descriptive design. The participants were recruited over a 2 month period, September 27 to November 25, 2003 from the outpatient or inpatient departments of gastroenterology at two large university hospitals in Seoul, Korea. Eligible patients were required (1) to have been pathologically diagnosed as having LC; (2) to be 20 years or older; (3) to not be suffering from any other chronic diseases (e.g., diabetes mellitus, end-stage renal disease, congestive heart failure, cerebral vascular disease); and (4) to have not been treated for HCC (e.g., transhepatic arterial chemoembolization, radiofrequency ablation, or Holmium therapy) within the past month. There were 167 patients who met the eligibility criteria for this study. Of those eligible patients, 129 (77.2%) agreed to participate in the study. Reasons for nonparticipation included the following: patient had other chronic diseases (10.2%), patient was feeling too ill or tired (9.6%), or patient was not interested in participating in the study (3.0%).
Measurements Symptom experience was measured using a multidimensional scale developed by the researchers based on the Theory of Unpleasant Symptoms.10 The scale is a self-report measurement that includes 18 symptoms: lack of appetite, nausea and/or vomiting, dyspepsia, abdominal distension and/or peripheral edema, shortness of breath (SOB) or dyspnea, dry mouth, itching, bodily pain, muscle cramps, RUQ pain, fatigue, dark urine, urinary difficulty, bleeding of the gums and/or bruising, tarry stools, drowsiness, decrease in concentration, and change in appearance (e.g., jaundice, ascites, gynecomastia). These 18 symptoms were extracted from the symptom
328
domains of the two HRQL instruments; liver disease quality of life 1.012 and chronic liver disease questionnaires.13 Each of the 18 items was measured for three dimensions: frequency, intensity, and distress on a 4-point scale (0 ¼ never experienced to 3 ¼ extremely frequent/extremely strong/extremely distressful). The total symptom experience score was calculated by adding the scores of the three dimensions that are the sum of the raw scores for18 symptoms. Thus, the range of the total symptom experience is from 0 to 162. For internal consistency reliability for overall symptom experience, the Cronbach’s alpha was 0.82. The demographic variables of age and gender were obtained, and clinical variables included disease severity, the etiology of LC, status with or without HCC, and number of hospitalizations. Disease severity was measured with the Child-Pugh classification based on serum bilirubin, albumin, and prothrombin time, and the degree of ascites and encephalopathy.14 The score can range from 5 to 15 with higher scores indicating greater severity. The ChildPugh score identifies three clinical classifications: Child A (range of 5--6), Child B (range of 7--9), and Child C (range of 10--15). Child C is the most severe class. Reported sensitivity and specificity of this scale are about 90%.6 For the etiology of LC, three etiologies were defined: LC from hepatitis B (LC-B), LC from hepatitis C (LC-C), and LC from alcohol abuse (LC-A).
Study Procedure This study was approved by the Institutional Review Board and the Ethics Committee of the two hospitals. Five patients participated in a pilot test in the outpatient department, and the researchers modified difficult or confusing items based on the responses. Potential participants were identified by physicians and nurses providing care. Those who met the inclusion criteria and were interested in participating were asked to contact a researcher. With the help of the clinical staff, patients were approached and the study purpose was described. Each patient who agreed to participate was given a consent form and all questions were answered. Almost all interviews were completed in approximately 20 minutes.
Kim et al.
Vol. 31 No. 4 April 2006
There were no missing data due to face-toface interview. For clinical variables, the Child-Pugh score was obtained from medical records, but if not present, the researcher could calculate the score from laboratory data, radiological studies, and physical assessment.
Data Analysis Statistical methods used were frequency, mean, and standard deviation (SD) to assess demographic, clinical characteristics, and the level of symptom experience. The associations between the level of symptom experience and study variables were tested using independent t-test, analysis of variance (ANOVA), and the multiple comparison was tested by Tukey test.
Results Demographic and Clinical Characteristics of the Participants Demographic and clinical characteristics are presented in Table 1. A total 129 LC patients with a mean age of 53.6 (SD ¼ 9.28) years participated in the study. Most of the participants were men (80.6%), married (90.7%), and had at least high school degree (67.5%). The number of patients who were employed (50.4%) or not employed (49.6%) was almost equal. For the disease severity, the patients were relatively evenly distributed in each severity classification: Child A (38.0%), Child B (34.9%), and Child C (27.1%). In terms of etiology, the patients with LC-B (82.2%) were most prevalent. The percentage of patients who also had HCC was 41.1% and patients without HCC 58.9%. Time since diagnosis ranged from 1 month to 15 years, with a mean of 3.76 (SD ¼ 3.23) years. The number of hospitalizations ranged from 0 to 25, with a mean of 3.39 (SD ¼ 3.31).
Symptom Experience in Patients with LC The overall symptom experience score (mean ¼ 41.67, SD ¼ 24.71) indicated that patients’ experience of symptoms was relatively low. Of the dimensions of symptom experience, the mean score for frequency was 14.71, for intensity 13.81, and for distress 13.15. While frequency had the highest score, there was no significant difference among three dimensions
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
329
Employment status
Unemployed Employed
65 50.4 64 49.6
In terms of symptom frequency, fatigue was most frequent, followed by abdominal distension and/or edema, change in appearance, dry mouth, and muscle cramps. For symptom intensity, fatigue was also most intense, followed by muscle cramps, abdominal distension or edema, dry mouth, and bleeding of the gums or bruising. For symptom distress, fatigue was also most distressing, followed by muscle cramps, abdominal distension and/or edema, change in appearance, and dry mouth. There was a difference in the rank order of symptoms for each dimension. For example, the frequency of muscle cramps was not high, but the intensity and distress were high, on the other hand, the frequency of change in appearance or dark urine was high, but the intensity and distress were low. Detailed information about symptom experience according to the three dimensions is presented in Table 4.
Child-Pugh classification
Child A Child B Child C
49 38 45 34.9 35 27.1
Correlates of Symptom Experience
Etiology of LC
LC-B LC-C LC-A
Status with or without HCC
LC without HCC LC with HCC
Table 1 Demographic and Clinical Characteristics of Participants (n ¼ 129) Classification
n
Age (years)
31--40 41--50 51--60 61--
10 7.8 53.61 9.29 43 33.3 47 36.4 29 22.5
Gender
Men Women
Marital status
Never married Married Widowed
Level of education
%
Mean SD
Characteristics
104 80.6 25 19.4 3
2.3
117 90.7 9 7.0
No education Elementary school Middle school High school College/ university
2 6 14 10.9 26 20.2 45 34.9 42 32.6
106 82.2 11 8.5 12 9.3 76 58.9 53 41.1
Time since diagnosis (years)
3.76 3.23
Number of hospitalizations
3.39 3.31
(F ¼ 1.10, P ¼ 0.33) (Table 2). Table 3 shows the rank order of individual symptom experience overall and for each of the three dimensions. Among the individual symptoms, fatigue had the highest score for overall symptom experience, followed by abdominal distension and/or peripheral edema, muscle cramps, dry mouth, and change in appearance.
The overall symptom experience score was not related to the demographic variables of age and gender. However, individual symptoms scores showed significant relationship with gender. Women had more severe muscle cramps (t ¼ 1.995, P ¼ 0.048), and more severe bleeding of the gums and/or bruising (t ¼ 2.299, P ¼ 0.023), whereas for men, dark urine was more severe (t ¼ 2.072, P ¼ 0.040). Age was not related to either the overall symptom experience or individual symptoms. Of the clinical variables, disease severity, measured by the Child-Pugh classification, showed significant relationship with overall symptom experience [F (2,122) ¼ 44.780, P < 0.001] (Table 4). Post hoc testing revealed that Child C class patients had more severe symptom experience than those in Child A class (t ¼ 7.873, P < 0.001) and than those in Child B class (t ¼ 5.068, P < 0.001). There
Table 2 Mean (SD) of Symptom Experience in Participants (n ¼ 129) Symptom Experience
Mean
SD
Actual Range
Possible Range
Overall Frequency dimension Intensity dimension Distress dimension
41.67 14.71 13.81 13.15
24.71 8.64 8.19 8.19
3--129 1--45 1--44 1--42
0--162 0--54 0--54 0--54
F
P
1.10
0.33
330
Table 3 Rank Order of Overall and Dimensional Symptom Experience (n ¼ 129) Dimension of Symptom Experience Rank
a
Overall (Mean SD)
4
Dry mouth (3.08 2.61)
5
8
Change in appearance (3.05 2.99) Bleeding of gums/bruising (2.95 2.50) Decrease in concentration (2.57 2.78) Lack of appetite (2.57 3.20)
9 10 11 12 13 14 15 16 17 18
Dark urine (2.36 2.63) Itching (2.26 2.73) SOB/dyspnea (2.20 2.95) Dyspepsia (1.99 2.44) Drowsiness (1.62 2.38) RUQ pain (1.35 2.18) Nausea/vomiting (1.24 2.08) Bodily pain (1.09 2.31) Tarry stools (0.94 1.97) Urinary difficulty (0.53 1.58)
6 7
Frequency (Mean SD) Fatigue (1.95 1.13) Abdominal distension/edema (1.22 1.24) Change in appearance (1.12 1.24) Dry mouth (1.08 .97) Muscle cramps(1.08 1.04)
Intensityb (Mean SD)
Distressb (Mean SD)
Fatigue (1.66 .97) Muscle cramps (1.15 1.11)
Fatigue (1.56 1.01) Muscle cramps (1.13 1.11)
Abdominal distension/edema (1.11 1.11) Dry mouth (1.02 .89)
Abdominal distension/edema (1.02 1.09) Change in appearance (0.98 1.02) Dry mouth (0.98 .85)
Bleeding of gums/bruising (1.07 .98) Dark urine (1.00 1.19)
Bleeding of gums/bruising (0.99 .88) Change in appearance (0.95 .97) Lack of appetite (0.87 1.10)
Bleeding of gums/bruising (0.88 .78) Lack of appetite (0.81 1.06)
Decrease in concentration (0.91 1.01) Lack of appetite (0.88 1.14) Itching (0.81 1.02) SOB/dyspnea (0.74 1.04) Dyspepsia (0.67 .84) Drowsiness (0.53 .80) RUQ pain (0.43 .71) Nausea/vomiting (0.43 .74) Bodily pain (0.33 .73) Tarry stools (0.27 .57) Urinary difficulty (0.20 .59)
Decrease in concentration (0.85 .95) Dark urine (0.78 .92) Itching (0.74 .93) SOB/dyspnea (0.71 .96) Dyspepsia (0.68 .85) Drowsiness (0.53 .82) RUQ pain (0.47 .79) Nausea/vomiting (0.41 .70) Bodily pain (0.38 .81) Tarry stools (0.33 .73) Urinary difficulty (0.18 .55)
Decrease in concentration (0.81 .91) SOB/dyspnea (0.75 1.00) Itching (0.71 .91) Dyspepsia (0.64 .80) Dark urine (0.59 .70) Drowsiness (0.55 .86) RUQ pain (0.44 .75) Nausea/vomiting (0.40 .68) Bodily pain (0.38 .83) Tarry stools (0.33 .75) Urinary difficulty (0.16 .48)
Vol. 31 No. 4 April 2006
SOB ¼ shortness of breath; RUQ ¼ right upper quadrant. a Possible range: 0--9. b Possible range: 0--3, higher mean scores indicate more severe symptom.
Kim et al.
3
Fatigue (5.16 2.94) Abdominal distension/edema (3.36 3.38) Muscle cramps (3.36 3.17)
1 2
b
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
331
Table 4 Correlates of Overall Symptom Experience in Participants (n ¼ 129) Variables Age
Classification
n
Mean SD
t or F or r
31--40 41--50 51--60 61--
10 43 47 29
43.50 23.02 40.72 22.82 42.91 25.73 40.45 27.30
0.101
0.959
P
Gender
Men Women
104 25
42.12 25.77 39.84 20.02
0.412
0.681
Disease Severity (Child-Pugh Classification)
Child A Child B Child C
49 45 35
25.59 17.12 40.71 13.70 65.43 26.20
44.780
<0.001
Etiology of LC
LC-B LC-C LC-A
105 11 12
39.90 2.31 54.73 10.48 43.67 6.32
1.860
0.160
Status with or without HCC
Without HCC With HCC
76 53
42.62 23.93 40.32 25.96
0.518
0.605
0.216
0.014
Number of Hospitalizations
was also a statistical difference between Child A and Child B classes (t ¼ 4.700, P < 0.001). Child C class patients had more severe experience in all symptoms except nausea and/or vomiting, RUQ pain, fatigue, and tarry stools. The etiology of LC was not related to overall symptom experience (F ¼ 1.860, P ¼ 0.160). However, of the 18 individual symptoms, only bleeding of the gums and/or bruising showed a significant relationship with the etiology of LC (F ¼ 4.036, P ¼ 0.009). Post hoc test revealed that patients with LC-C had more severe bleeding of the gums and/or bruising than patients with LC-B (t ¼ 2.259, P ¼ 0.009). There was no difference in overall (t ¼ 0.518, P ¼ 0.605) or individual symptom experience between the cancer group and noncancer group. The number of hospitalizations correlated with overall symptom experience significantly (r ¼ 0.216, P ¼ 0.014). In terms of individual symptoms, nausea and/or vomiting (r ¼ 0.252, P ¼ 0.004), muscle cramps (r ¼ 0.186, P ¼ 0.035), drowsiness (r ¼ 0.173, P ¼ 0.050), and decrease of concentration (r ¼ 0.294, P ¼ 0.001) showed significant relationship with the number of hospitalizations.
Discussion This is the first study that has looked at the symptom experience in relation to demographic and clinical characteristics in patients with LC. The overall symptom experience score was relatively low (mean ¼ 41.67,
129
SD ¼ 24.71). This result may be a characteristic of the disease itself. Chronic liver diseases tend to be naturally asymptomatic because the liver can compensate even when 10% of total liver function is maintained.6 Thus, unpleasant symptoms tend to appear in the later stages. In this study, the range of symptom score was broad, from 3 to 129. This result reflects the wide variation in symptoms for patients with LC. Examination of the rank order of symptoms within each dimension of symptom experience showed important findings. For example, the frequency of muscle cramps was not high, but their intensity and distress were; on the other hand, the frequency of dark urine was high, but its intensity and distress were low. These results support Theory of Unpleasant Symptoms of Lenz et al.’s10 that symptoms have multidimensional aspects, so that measurement of symptoms should be done multidimensionally. Most previous instruments measuring symptoms only have measured the frequency dimension, and there is a need to measure not only frequency but also intensity and distress to assess and manage symptoms with a tailored approach. Looking at symptoms specifically, it was found that the main symptoms needing management were fatigue, abdominal distension, and/or peripheral edema, and muscle cramps. Fatigue is the commonest symptom in chronic liver diseases, and an important quality of life determinant.15 It is especially problematic in
332
the patients with chronic hepatitis C.16--19 Poynard et al.19 reported that fatigue in patients with liver disease is significantly associated with gender (greater in women), age (greater in those >50 years old), and having cirrhosis. However, in this study, fatigue was not related to age or gender. Most studies on fatigue in chronic liver disease have focused on hepatitis patients, but there is a need to evaluate of fatigue in cirrhotic patients. In addition, future studies should identify the mechanism of fatigue and factors relating to fatigue in patients with LC. These findings may be useful in developing symptom management programs for patients with LC. Abdominal distension and/or peripheral edema are two of the distressful symptoms in cirrhotic patients. Abdominal distension is caused by ascites, the most common complication in patients with decompensated cirrhosis.20 Most researches on ascites have emphasized the mechanism21,22 or treatment20,23,24 of ascites; little is known about the nature and factors relating to unpleasant symptoms caused by ascites. Peripheral edema is caused by systematic venous hypertension or reduced protein synthesis.25 There also is lack of information about peripheral edema in cirrhotic patients. Abdominal distension and/or peripheral edema are not only distressful symptoms in themselves, but also their treatment can contribute to other troublesome symptoms. Mobility can be limited due to peripheral edema, and patients with severe edema may even experience pain. With pain, patients tend to rest, aggravating fatigue. Patients with abdominal distension from ascites often have dyspepsia or feel bloated. If ascites is more severe, patients may experience sleep disturbances due to dyspnea. Patients who take diuretics experience dry mouth, muscle cramps, nausea and/or vomiting, dizziness, and weakness. Therefore, it is important to understand symptom interactions and develop a symptom-integrated intervention to effectively manage ascites or edema. Muscle cramps are painful, involuntary contractions of skeletal muscle. They occur frequently in individuals with cirrhosis, regardless of the etiology, and are thought to be a symptom of cirrhotic-stage liver disease.26 The pathophysiology of these cramps remains elusive; hence, a specific therapy has not been
Kim et al.
Vol. 31 No. 4 April 2006
identified. Many therapeutic approaches have been offered, yet their efficacy, safety, and mechanisms of action remain poorly defined. Muscle cramps were not associated with age and gender. This result is similar to a previous study.27 Abrams et al.28 reported that there was an increased prevalence of chronic muscle cramps in patients with cirrhosis that appeared to be independent of the etiology of cirrhosis, diuretic consumption, serum electrolyte alterations, or differences in Child’s classification. Consistent with Abrams et al.,28 this study found no difference in the etiology of cirrhosis and Child’s classification. Muscle cramps were only the fifth symptom in frequency, but were the second symptom in intensity and distress. Furthermore, muscle cramps were a strong factor influencing HRQL impairment in patients with cirrhosis.9 Therefore, it is essential to manage muscle cramps in the patients with cirrhosis. Examination of the association of symptom experience and demographic and clinical variables showed that the overall symptom experience was not significantly related to age, gender, the etiology of LC, or status with or without HCC. It is difficult to compare the results with other studies, because this study was the first to explore symptom experience in patients with LC. It is also true that the present study had a very skewed sample; most of the participants were men (80.6%), married (90.7%), and suffering from Hepatitis B Virus (HBV) infection-related cirrhosis (82.2%). These characteristics might affect the ability to distinguish symptom experience based on demographic and clinical characteristics. Thus, repetitive studies on symptom experience in diverse patients with LC are suggested. Among the study variables, the Child-Pugh classification had a significant association with overall symptom experience. This finding indicates that disease severity is a strong determinant of symptom experience in patients with LC. Health care providers should apply an approach that is tailored to the level of severity. Also, the number of hospitalizations correlated significantly with symptom experience. This implies that effective symptom management could reduce medical cost by decreasing the number of hospitalizations. There was an interesting finding in this study. In general, cancer is different from other
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
chronic diseases because of the nature of the disease itself, its treatment and consequences.29 However, the existence of HCC did not show a relationship with the symptom experience in patients with LC in this study. This result is consistent with that of the Tranmer et al.30 study, though the study sample was different. This finding means that seriously ill patients may experience severe symptom distress even without cancer. Health care providers should give more attention to the severity of LC when considering symptom management for the patients with HCC. However, the symptoms included in this study were largely physical symptoms. The inclusion of psychological symptoms may have demonstrated a difference in symptom experience between the cancer group and noncancer group. Therefore, a follow-up study including psychological symptoms is suggested. These findings must be considered within the limitations of this study. This study involved a convenience sample and a cross-sectional design. These factors may limit the degree to which the results can be generalized. Nonetheless, the findings provide useful information in developing an effective symptom management program for the patients with LC. This study highlights the priority in symptoms needing management for patients with LC, and emphasizes the importance of multidimensional assessment for symptom experience. Based on the results of this study, the following studies are suggested: (1) identifying other factors, such as psychological or situational factors, that may influence the symptom experience; and (2) testing the effects of symptom management programs in patients with LC.
333
4. Han YS, Kim BH, Back Y, et al. The change of the etiology, complications and cause of death of the liver cirrhosis in 1990s. Korean J Hepatol 2000;6:328--339. 5. Starr S, Hand H. Nursing care of chronic and acute liver failure. Nurs Stand 2002;16:47--54. 6. Kim JL, Koh KC, Kim SL, et al. Gastroenterology disorders. Seoul: Il Jo Gak, 2000. 7. Schiff E, Sorrel M, Maddrey W. Disease of the liver, 8th ed. Philadelphia: Lippincott Williams & Wilkins, 1999. 8. Younossi ZM, Boparai N, Price LL, et al. Health-related quality of life in chronic liver disease: the impact of type and severity of disease. Am J Gastroenterol 2001;96:199--205. 9. Marchesini G, Bianchi G, Salerno PAF, et al. Factors associated with poor health-related quality of life of patients with cirrhosis. Eur J Gastroenterol Hepatol 2001;13:303--314. 10. Lenz E, Pugh L, Milligan R, Gift A, Suppe E. The middle-range of theory of unpleasant symptoms: an update. Adv Nurs Sci 1997;19:14--27. 11. Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 1994;30: 1326--1336. 12. Gralnek IM, Hays RD, Kilbourne A, et al. Development and evaluation of the Liver Disease Quality of Life instrument in persons with advanced, chronic liver diseasedthe LDQOL 1.0. Am J Gastroenterol 2000;95:3552--3565. 13. Younossi ZM, Guyatt G, Kiwi ML, Boparai N, King D. Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease. Gut 1999;45: 295--300. 14. Pugh RNH, Murray-Lyon IM, Dawson JL, et al. Transection of the esophagus for bleeding esophageal varices. Br J Surg 1973;60:646--649.
References
15. Prince MI, James OF, Holland NP, Jones DF. Validation of a fatigue impact score in primary biliary cirrhosis: towards a standard for clinical and trial use. J Hepatol 2000;32:368--373.
1. Anthony PP, Ishak KG, Nayak NC, et al. The morphology of cirrhosis. Recommendations on definition by a working group sponsored by the World Health Organization. J Clin Pathol 1978;31: 395--414.
16. Goh J, Coughlan B, Quinn J, O’Keane JC, Crowe J. Fatigue does not correlate with the degree of hepatitis or the presence of autoimmune disorders in chronic hepatitis C infection. Eur J Gastroenterol Hepatol 1999;11:833--838.
2. World Health Organization. 2000. Available from. http://www.who.int/mediacentre/factsheets/ fs204/en/ and http://www.who.int/mediacentre/ factsheets/fs164/en/.
17. Kumar D, Tandon RK. Fatigue in cholestatic liver diseaseda perplexing symptom. Postgrad Med J 2002;78:404--407.
3. Korea National Statistical Office. 2000. Annual report on the cause of death statistics. Seoul: Korea National Statistical Office, September 27, 2002.
18. Obhrai J, Yoshio H, Anand BS. Assessment of fatigue and psychologic disturbances in patients with hepatitis C virus infection. J Clin Gastroenterol 2001;32:413--417.
334
Kim et al.
Vol. 31 No. 4 April 2006
19. Poynard T, Cacoub P, Gatziu V, et al. Fatigue in patients with chronic hepatitis C. J Viral Hepat 2002;9:295--303.
26. Marotta PJ, Graziadei IW, Ghent CN. Muscle cramps: a ‘complication’ of cirrhosis. Can J Gastroenterol 2001;14:21--25.
20. Saadeh S, Davis GL. Management of ascites in patients with end-stage liver disease. Rev Gastroenterol Disord 2004;4:175--185.
27. Angeli P, Albino G, Carraro P, et al. Cirrhosis and muscle cramps: evidence of a causal relationship. Hepatology 1996;23:264--273.
21. Suzuki K, Nakamura A, Kato A, Yoshida T, Sato S. Mechanism of ascites formation and its management in liver cirrhosis. Nippon Rinsho 1994;52: 97--103.
28. Abrams GA, Concato J, Fallon MB. Muscle cramps in patients with cirrhosis. Am J Gastroenterol 1996;91:1363--1366.
22. Aslam N, Marino CR. Malignant ascites: new concepts in pathophysiology, diagnosis, and management. Arch Intern Med 2001;161:2733--2737. 23. Yeung E, Wong FS. The management of cirrhotic ascites. MedGenMed 2002;4:8. 24. Sivayokan T, Dillon JF. Cirrhotic ascites: a review of management. Hosp Med 2004;65:22--26. 25. Cho S, Atwood JE. Peripheral edema. Am J Med 2002;113:580--586.
29. McPherson CJ, Higginson IJ, Hearn J. Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. J Public Health Med 2001;23:227--234. 30. Tranmer JE, Heyland D, Dudgeon D, et al. Measuring the symptom experience of seriously ill cancer and noncancer hospitalized patients near the end of life with the memorial symptom assessment scale. J Pain Symptom Manage 2003;25:420--429.
Journal of Pain and Symptom Management
Vol. 31 No. 4 April 2006
Original Article
Symptom Experience in Korean Patients with Liver Cirrhosis Soo-Hyun Kim, MS, RN, Eui-Geum Oh, PhD, RN, Won-Hee Lee, PhD, RN, Ok-Soo Kim, PhD, RN, and Kwang-Hyup Han, PhD, MD Quality of Cancer Care Branch, Research Institute and Hospital, National Cancer Center (S.H.K.), Goyang, Gyeonggi; Yonsei University College of Nursing (E.G.O., W.H.L.), Seoul; College of Nursing Science (O.S.K.), Ewha Womans University, Seoul; and Department of Internal Medicine (K.H.H.), Institute of Gastroenterology, Yonsei University College of Medicine, Seoul, South Korea
Abstract This study was done to examine the level of symptom experience, and symptom variation in relation to demographic and clinical variables, in Korean patients with liver cirrhosis (LC). Symptom experience was measured using a scale developed by the researchers through a literature review on LC. Participants were 129 patients whose mean age was 53.6 (standard deviation [SD] ¼ 9.28) years. The results indicated that (1) overall symptom experience was relatively low (mean 41.67, SD 24.71); (2) the main symptoms needing a management were fatigue, abdominal distension and/or peripheral edema, and muscle cramps; and (3) among the study variables, the severity of LC (P < 0.001) and the number of hospitalizations (P ¼ 0.014) showed a significant relationship with overall symptom experience. These results suggest that symptom assessment requires a multidimensional approach and that it is imperative to consider disease severity in developing tailored symptom management programs for Korean patients with LC. J Pain Symptom Manage 2006;31:326--334. Ó 2006 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved. Key Words Symptom, experience, liver cirrhosis
Accepted for publication: August 31, 2005.
abuse. According to the World Health Organization,2 there are estimated 350 million carriers of Hepatitis B and 170 million carriers of Hepatitis C throughout the world. Seventyfive percent of carriers of Hepatitis B are Asian. In Korea, liver disease is the fifth most common cause of mortality; it is first for men in their 40s.3 Three million people (5%--6% of the population) in Korea are infected with Hepatitis B, which is the main cause of LC, and in the 1990s, the incidence of alcoholic LC increased rapidly.4 The mortality from liver diseases in Korea is the third highest in the 31 countries in the Organization for Economic
Ó 2006 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.
0885-3924/06/$--see front matter doi:10.1016/j.jpainsymman.2005.08.015
Introduction Liver cirrhosis (LC) is characterized by fibrosis and conversion of normal liver architecture into structurally abnormal nodules.1 It originates from viral infections and/or alcohol
Address reprint requests to: Soo-Hyun Kim, MS, RN, Quality of Cancer Care Branch, Research Institute and Hospital, National Cancer Center, 809 Madudong, Ilsandong-gu, Goyang-si, Gyeonggi-do 411769, South Korea. E-mail: [email protected].
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
Cooperation and Development.3 These epidemiological data indicate that LC is a significant chronic disease in Korea that must be addressed by health care providers. Patients with LC experience nonspecific symptoms such as lack of appetite, dyspepsia, nausea, or weakness, which initially do not directly indicate early liver disease.5 However, as the disease progresses to an advanced stage with complications, patients can experience severe symptoms such as fatigue, itching, abdominal distension, peripheral edema, dyspnea, right upper quadrant (RUQ) pain, or changes in the level of consciousness.6 These may lead to physical as well as psychological and functional limitations that profoundly decrease health-related quality of life (HRQL) and well-being.7 In a study by Younossi et al.,8 patients with LC had similar negative level of HRQL compared to patients with chronic obstructive pulmonary disease or congestive heart failure. Marchesini et al.9 found that in patients with cirrhosis, HRQL was seriously impaired and associated with particular symptoms such as muscle cramps and pruritus. Although previous studies suggest a relationship between symptom experience and HRQL, information about the level of overall symptom experience and the factors relating to symptom experience in the patients with LC is limited. Despite the high prevalence and mortality of LC in Korea, research on symptom experience has not been reported for patients with LC. Exploring symptom experience in patients with LC can provide essential information to develop an effective symptom management program, which would contribute to ultimately enhancing patients’ quality of life. Lenz et al.10 suggested three dimensions relevant to symptom evaluation: (1) frequency with which the symptom occurs; (2) intensity of the symptom; and (3) the degree of distress for the symptom. Portenoy et al.11 also emphasized that symptom frequency, intensity, and distress together yield clinical insight that cannot be captured by a symptom checklist alone. Thus, there is a need to use a multidimensional evaluation of symptom experience in patients with LC. The purpose of this study was (1) to examine the level of symptom experience in as to frequency, intensity, and distress; (2) to analyze
327
symptom variations in relation to demographic characteristics (age and gender) and clinical variables (severity of LC using the Child-Pugh classification, the etiology of LC, the status with or without hepatocellular carcinoma [HCC], and the number of hospitalizations) in Korean patients with LC.
Methods Study Design and Participants This study used a cross-sectional, descriptive design. The participants were recruited over a 2 month period, September 27 to November 25, 2003 from the outpatient or inpatient departments of gastroenterology at two large university hospitals in Seoul, Korea. Eligible patients were required (1) to have been pathologically diagnosed as having LC; (2) to be 20 years or older; (3) to not be suffering from any other chronic diseases (e.g., diabetes mellitus, end-stage renal disease, congestive heart failure, cerebral vascular disease); and (4) to have not been treated for HCC (e.g., transhepatic arterial chemoembolization, radiofrequency ablation, or Holmium therapy) within the past month. There were 167 patients who met the eligibility criteria for this study. Of those eligible patients, 129 (77.2%) agreed to participate in the study. Reasons for nonparticipation included the following: patient had other chronic diseases (10.2%), patient was feeling too ill or tired (9.6%), or patient was not interested in participating in the study (3.0%).
Measurements Symptom experience was measured using a multidimensional scale developed by the researchers based on the Theory of Unpleasant Symptoms.10 The scale is a self-report measurement that includes 18 symptoms: lack of appetite, nausea and/or vomiting, dyspepsia, abdominal distension and/or peripheral edema, shortness of breath (SOB) or dyspnea, dry mouth, itching, bodily pain, muscle cramps, RUQ pain, fatigue, dark urine, urinary difficulty, bleeding of the gums and/or bruising, tarry stools, drowsiness, decrease in concentration, and change in appearance (e.g., jaundice, ascites, gynecomastia). These 18 symptoms were extracted from the symptom
328
domains of the two HRQL instruments; liver disease quality of life 1.012 and chronic liver disease questionnaires.13 Each of the 18 items was measured for three dimensions: frequency, intensity, and distress on a 4-point scale (0 ¼ never experienced to 3 ¼ extremely frequent/extremely strong/extremely distressful). The total symptom experience score was calculated by adding the scores of the three dimensions that are the sum of the raw scores for18 symptoms. Thus, the range of the total symptom experience is from 0 to 162. For internal consistency reliability for overall symptom experience, the Cronbach’s alpha was 0.82. The demographic variables of age and gender were obtained, and clinical variables included disease severity, the etiology of LC, status with or without HCC, and number of hospitalizations. Disease severity was measured with the Child-Pugh classification based on serum bilirubin, albumin, and prothrombin time, and the degree of ascites and encephalopathy.14 The score can range from 5 to 15 with higher scores indicating greater severity. The ChildPugh score identifies three clinical classifications: Child A (range of 5--6), Child B (range of 7--9), and Child C (range of 10--15). Child C is the most severe class. Reported sensitivity and specificity of this scale are about 90%.6 For the etiology of LC, three etiologies were defined: LC from hepatitis B (LC-B), LC from hepatitis C (LC-C), and LC from alcohol abuse (LC-A).
Study Procedure This study was approved by the Institutional Review Board and the Ethics Committee of the two hospitals. Five patients participated in a pilot test in the outpatient department, and the researchers modified difficult or confusing items based on the responses. Potential participants were identified by physicians and nurses providing care. Those who met the inclusion criteria and were interested in participating were asked to contact a researcher. With the help of the clinical staff, patients were approached and the study purpose was described. Each patient who agreed to participate was given a consent form and all questions were answered. Almost all interviews were completed in approximately 20 minutes.
Kim et al.
Vol. 31 No. 4 April 2006
There were no missing data due to face-toface interview. For clinical variables, the Child-Pugh score was obtained from medical records, but if not present, the researcher could calculate the score from laboratory data, radiological studies, and physical assessment.
Data Analysis Statistical methods used were frequency, mean, and standard deviation (SD) to assess demographic, clinical characteristics, and the level of symptom experience. The associations between the level of symptom experience and study variables were tested using independent t-test, analysis of variance (ANOVA), and the multiple comparison was tested by Tukey test.
Results Demographic and Clinical Characteristics of the Participants Demographic and clinical characteristics are presented in Table 1. A total 129 LC patients with a mean age of 53.6 (SD ¼ 9.28) years participated in the study. Most of the participants were men (80.6%), married (90.7%), and had at least high school degree (67.5%). The number of patients who were employed (50.4%) or not employed (49.6%) was almost equal. For the disease severity, the patients were relatively evenly distributed in each severity classification: Child A (38.0%), Child B (34.9%), and Child C (27.1%). In terms of etiology, the patients with LC-B (82.2%) were most prevalent. The percentage of patients who also had HCC was 41.1% and patients without HCC 58.9%. Time since diagnosis ranged from 1 month to 15 years, with a mean of 3.76 (SD ¼ 3.23) years. The number of hospitalizations ranged from 0 to 25, with a mean of 3.39 (SD ¼ 3.31).
Symptom Experience in Patients with LC The overall symptom experience score (mean ¼ 41.67, SD ¼ 24.71) indicated that patients’ experience of symptoms was relatively low. Of the dimensions of symptom experience, the mean score for frequency was 14.71, for intensity 13.81, and for distress 13.15. While frequency had the highest score, there was no significant difference among three dimensions
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
329
Employment status
Unemployed Employed
65 50.4 64 49.6
In terms of symptom frequency, fatigue was most frequent, followed by abdominal distension and/or edema, change in appearance, dry mouth, and muscle cramps. For symptom intensity, fatigue was also most intense, followed by muscle cramps, abdominal distension or edema, dry mouth, and bleeding of the gums or bruising. For symptom distress, fatigue was also most distressing, followed by muscle cramps, abdominal distension and/or edema, change in appearance, and dry mouth. There was a difference in the rank order of symptoms for each dimension. For example, the frequency of muscle cramps was not high, but the intensity and distress were high, on the other hand, the frequency of change in appearance or dark urine was high, but the intensity and distress were low. Detailed information about symptom experience according to the three dimensions is presented in Table 4.
Child-Pugh classification
Child A Child B Child C
49 38 45 34.9 35 27.1
Correlates of Symptom Experience
Etiology of LC
LC-B LC-C LC-A
Status with or without HCC
LC without HCC LC with HCC
Table 1 Demographic and Clinical Characteristics of Participants (n ¼ 129) Classification
n
Age (years)
31--40 41--50 51--60 61--
10 7.8 53.61 9.29 43 33.3 47 36.4 29 22.5
Gender
Men Women
Marital status
Never married Married Widowed
Level of education
%
Mean SD
Characteristics
104 80.6 25 19.4 3
2.3
117 90.7 9 7.0
No education Elementary school Middle school High school College/ university
2 6 14 10.9 26 20.2 45 34.9 42 32.6
106 82.2 11 8.5 12 9.3 76 58.9 53 41.1
Time since diagnosis (years)
3.76 3.23
Number of hospitalizations
3.39 3.31
(F ¼ 1.10, P ¼ 0.33) (Table 2). Table 3 shows the rank order of individual symptom experience overall and for each of the three dimensions. Among the individual symptoms, fatigue had the highest score for overall symptom experience, followed by abdominal distension and/or peripheral edema, muscle cramps, dry mouth, and change in appearance.
The overall symptom experience score was not related to the demographic variables of age and gender. However, individual symptoms scores showed significant relationship with gender. Women had more severe muscle cramps (t ¼ 1.995, P ¼ 0.048), and more severe bleeding of the gums and/or bruising (t ¼ 2.299, P ¼ 0.023), whereas for men, dark urine was more severe (t ¼ 2.072, P ¼ 0.040). Age was not related to either the overall symptom experience or individual symptoms. Of the clinical variables, disease severity, measured by the Child-Pugh classification, showed significant relationship with overall symptom experience [F (2,122) ¼ 44.780, P < 0.001] (Table 4). Post hoc testing revealed that Child C class patients had more severe symptom experience than those in Child A class (t ¼ 7.873, P < 0.001) and than those in Child B class (t ¼ 5.068, P < 0.001). There
Table 2 Mean (SD) of Symptom Experience in Participants (n ¼ 129) Symptom Experience
Mean
SD
Actual Range
Possible Range
Overall Frequency dimension Intensity dimension Distress dimension
41.67 14.71 13.81 13.15
24.71 8.64 8.19 8.19
3--129 1--45 1--44 1--42
0--162 0--54 0--54 0--54
F
P
1.10
0.33
330
Table 3 Rank Order of Overall and Dimensional Symptom Experience (n ¼ 129) Dimension of Symptom Experience Rank
a
Overall (Mean SD)
4
Dry mouth (3.08 2.61)
5
8
Change in appearance (3.05 2.99) Bleeding of gums/bruising (2.95 2.50) Decrease in concentration (2.57 2.78) Lack of appetite (2.57 3.20)
9 10 11 12 13 14 15 16 17 18
Dark urine (2.36 2.63) Itching (2.26 2.73) SOB/dyspnea (2.20 2.95) Dyspepsia (1.99 2.44) Drowsiness (1.62 2.38) RUQ pain (1.35 2.18) Nausea/vomiting (1.24 2.08) Bodily pain (1.09 2.31) Tarry stools (0.94 1.97) Urinary difficulty (0.53 1.58)
6 7
Frequency (Mean SD) Fatigue (1.95 1.13) Abdominal distension/edema (1.22 1.24) Change in appearance (1.12 1.24) Dry mouth (1.08 .97) Muscle cramps(1.08 1.04)
Intensityb (Mean SD)
Distressb (Mean SD)
Fatigue (1.66 .97) Muscle cramps (1.15 1.11)
Fatigue (1.56 1.01) Muscle cramps (1.13 1.11)
Abdominal distension/edema (1.11 1.11) Dry mouth (1.02 .89)
Abdominal distension/edema (1.02 1.09) Change in appearance (0.98 1.02) Dry mouth (0.98 .85)
Bleeding of gums/bruising (1.07 .98) Dark urine (1.00 1.19)
Bleeding of gums/bruising (0.99 .88) Change in appearance (0.95 .97) Lack of appetite (0.87 1.10)
Bleeding of gums/bruising (0.88 .78) Lack of appetite (0.81 1.06)
Decrease in concentration (0.91 1.01) Lack of appetite (0.88 1.14) Itching (0.81 1.02) SOB/dyspnea (0.74 1.04) Dyspepsia (0.67 .84) Drowsiness (0.53 .80) RUQ pain (0.43 .71) Nausea/vomiting (0.43 .74) Bodily pain (0.33 .73) Tarry stools (0.27 .57) Urinary difficulty (0.20 .59)
Decrease in concentration (0.85 .95) Dark urine (0.78 .92) Itching (0.74 .93) SOB/dyspnea (0.71 .96) Dyspepsia (0.68 .85) Drowsiness (0.53 .82) RUQ pain (0.47 .79) Nausea/vomiting (0.41 .70) Bodily pain (0.38 .81) Tarry stools (0.33 .73) Urinary difficulty (0.18 .55)
Decrease in concentration (0.81 .91) SOB/dyspnea (0.75 1.00) Itching (0.71 .91) Dyspepsia (0.64 .80) Dark urine (0.59 .70) Drowsiness (0.55 .86) RUQ pain (0.44 .75) Nausea/vomiting (0.40 .68) Bodily pain (0.38 .83) Tarry stools (0.33 .75) Urinary difficulty (0.16 .48)
Vol. 31 No. 4 April 2006
SOB ¼ shortness of breath; RUQ ¼ right upper quadrant. a Possible range: 0--9. b Possible range: 0--3, higher mean scores indicate more severe symptom.
Kim et al.
3
Fatigue (5.16 2.94) Abdominal distension/edema (3.36 3.38) Muscle cramps (3.36 3.17)
1 2
b
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
331
Table 4 Correlates of Overall Symptom Experience in Participants (n ¼ 129) Variables Age
Classification
n
Mean SD
t or F or r
31--40 41--50 51--60 61--
10 43 47 29
43.50 23.02 40.72 22.82 42.91 25.73 40.45 27.30
0.101
0.959
P
Gender
Men Women
104 25
42.12 25.77 39.84 20.02
0.412
0.681
Disease Severity (Child-Pugh Classification)
Child A Child B Child C
49 45 35
25.59 17.12 40.71 13.70 65.43 26.20
44.780
<0.001
Etiology of LC
LC-B LC-C LC-A
105 11 12
39.90 2.31 54.73 10.48 43.67 6.32
1.860
0.160
Status with or without HCC
Without HCC With HCC
76 53
42.62 23.93 40.32 25.96
0.518
0.605
0.216
0.014
Number of Hospitalizations
was also a statistical difference between Child A and Child B classes (t ¼ 4.700, P < 0.001). Child C class patients had more severe experience in all symptoms except nausea and/or vomiting, RUQ pain, fatigue, and tarry stools. The etiology of LC was not related to overall symptom experience (F ¼ 1.860, P ¼ 0.160). However, of the 18 individual symptoms, only bleeding of the gums and/or bruising showed a significant relationship with the etiology of LC (F ¼ 4.036, P ¼ 0.009). Post hoc test revealed that patients with LC-C had more severe bleeding of the gums and/or bruising than patients with LC-B (t ¼ 2.259, P ¼ 0.009). There was no difference in overall (t ¼ 0.518, P ¼ 0.605) or individual symptom experience between the cancer group and noncancer group. The number of hospitalizations correlated with overall symptom experience significantly (r ¼ 0.216, P ¼ 0.014). In terms of individual symptoms, nausea and/or vomiting (r ¼ 0.252, P ¼ 0.004), muscle cramps (r ¼ 0.186, P ¼ 0.035), drowsiness (r ¼ 0.173, P ¼ 0.050), and decrease of concentration (r ¼ 0.294, P ¼ 0.001) showed significant relationship with the number of hospitalizations.
Discussion This is the first study that has looked at the symptom experience in relation to demographic and clinical characteristics in patients with LC. The overall symptom experience score was relatively low (mean ¼ 41.67,
129
SD ¼ 24.71). This result may be a characteristic of the disease itself. Chronic liver diseases tend to be naturally asymptomatic because the liver can compensate even when 10% of total liver function is maintained.6 Thus, unpleasant symptoms tend to appear in the later stages. In this study, the range of symptom score was broad, from 3 to 129. This result reflects the wide variation in symptoms for patients with LC. Examination of the rank order of symptoms within each dimension of symptom experience showed important findings. For example, the frequency of muscle cramps was not high, but their intensity and distress were; on the other hand, the frequency of dark urine was high, but its intensity and distress were low. These results support Theory of Unpleasant Symptoms of Lenz et al.’s10 that symptoms have multidimensional aspects, so that measurement of symptoms should be done multidimensionally. Most previous instruments measuring symptoms only have measured the frequency dimension, and there is a need to measure not only frequency but also intensity and distress to assess and manage symptoms with a tailored approach. Looking at symptoms specifically, it was found that the main symptoms needing management were fatigue, abdominal distension, and/or peripheral edema, and muscle cramps. Fatigue is the commonest symptom in chronic liver diseases, and an important quality of life determinant.15 It is especially problematic in
332
the patients with chronic hepatitis C.16--19 Poynard et al.19 reported that fatigue in patients with liver disease is significantly associated with gender (greater in women), age (greater in those >50 years old), and having cirrhosis. However, in this study, fatigue was not related to age or gender. Most studies on fatigue in chronic liver disease have focused on hepatitis patients, but there is a need to evaluate of fatigue in cirrhotic patients. In addition, future studies should identify the mechanism of fatigue and factors relating to fatigue in patients with LC. These findings may be useful in developing symptom management programs for patients with LC. Abdominal distension and/or peripheral edema are two of the distressful symptoms in cirrhotic patients. Abdominal distension is caused by ascites, the most common complication in patients with decompensated cirrhosis.20 Most researches on ascites have emphasized the mechanism21,22 or treatment20,23,24 of ascites; little is known about the nature and factors relating to unpleasant symptoms caused by ascites. Peripheral edema is caused by systematic venous hypertension or reduced protein synthesis.25 There also is lack of information about peripheral edema in cirrhotic patients. Abdominal distension and/or peripheral edema are not only distressful symptoms in themselves, but also their treatment can contribute to other troublesome symptoms. Mobility can be limited due to peripheral edema, and patients with severe edema may even experience pain. With pain, patients tend to rest, aggravating fatigue. Patients with abdominal distension from ascites often have dyspepsia or feel bloated. If ascites is more severe, patients may experience sleep disturbances due to dyspnea. Patients who take diuretics experience dry mouth, muscle cramps, nausea and/or vomiting, dizziness, and weakness. Therefore, it is important to understand symptom interactions and develop a symptom-integrated intervention to effectively manage ascites or edema. Muscle cramps are painful, involuntary contractions of skeletal muscle. They occur frequently in individuals with cirrhosis, regardless of the etiology, and are thought to be a symptom of cirrhotic-stage liver disease.26 The pathophysiology of these cramps remains elusive; hence, a specific therapy has not been
Kim et al.
Vol. 31 No. 4 April 2006
identified. Many therapeutic approaches have been offered, yet their efficacy, safety, and mechanisms of action remain poorly defined. Muscle cramps were not associated with age and gender. This result is similar to a previous study.27 Abrams et al.28 reported that there was an increased prevalence of chronic muscle cramps in patients with cirrhosis that appeared to be independent of the etiology of cirrhosis, diuretic consumption, serum electrolyte alterations, or differences in Child’s classification. Consistent with Abrams et al.,28 this study found no difference in the etiology of cirrhosis and Child’s classification. Muscle cramps were only the fifth symptom in frequency, but were the second symptom in intensity and distress. Furthermore, muscle cramps were a strong factor influencing HRQL impairment in patients with cirrhosis.9 Therefore, it is essential to manage muscle cramps in the patients with cirrhosis. Examination of the association of symptom experience and demographic and clinical variables showed that the overall symptom experience was not significantly related to age, gender, the etiology of LC, or status with or without HCC. It is difficult to compare the results with other studies, because this study was the first to explore symptom experience in patients with LC. It is also true that the present study had a very skewed sample; most of the participants were men (80.6%), married (90.7%), and suffering from Hepatitis B Virus (HBV) infection-related cirrhosis (82.2%). These characteristics might affect the ability to distinguish symptom experience based on demographic and clinical characteristics. Thus, repetitive studies on symptom experience in diverse patients with LC are suggested. Among the study variables, the Child-Pugh classification had a significant association with overall symptom experience. This finding indicates that disease severity is a strong determinant of symptom experience in patients with LC. Health care providers should apply an approach that is tailored to the level of severity. Also, the number of hospitalizations correlated significantly with symptom experience. This implies that effective symptom management could reduce medical cost by decreasing the number of hospitalizations. There was an interesting finding in this study. In general, cancer is different from other
Vol. 31 No. 4 April 2006
Symptom Experience in Korean Patients with Liver Cirrhosis
chronic diseases because of the nature of the disease itself, its treatment and consequences.29 However, the existence of HCC did not show a relationship with the symptom experience in patients with LC in this study. This result is consistent with that of the Tranmer et al.30 study, though the study sample was different. This finding means that seriously ill patients may experience severe symptom distress even without cancer. Health care providers should give more attention to the severity of LC when considering symptom management for the patients with HCC. However, the symptoms included in this study were largely physical symptoms. The inclusion of psychological symptoms may have demonstrated a difference in symptom experience between the cancer group and noncancer group. Therefore, a follow-up study including psychological symptoms is suggested. These findings must be considered within the limitations of this study. This study involved a convenience sample and a cross-sectional design. These factors may limit the degree to which the results can be generalized. Nonetheless, the findings provide useful information in developing an effective symptom management program for the patients with LC. This study highlights the priority in symptoms needing management for patients with LC, and emphasizes the importance of multidimensional assessment for symptom experience. Based on the results of this study, the following studies are suggested: (1) identifying other factors, such as psychological or situational factors, that may influence the symptom experience; and (2) testing the effects of symptom management programs in patients with LC.
333
4. Han YS, Kim BH, Back Y, et al. The change of the etiology, complications and cause of death of the liver cirrhosis in 1990s. Korean J Hepatol 2000;6:328--339. 5. Starr S, Hand H. Nursing care of chronic and acute liver failure. Nurs Stand 2002;16:47--54. 6. Kim JL, Koh KC, Kim SL, et al. Gastroenterology disorders. Seoul: Il Jo Gak, 2000. 7. Schiff E, Sorrel M, Maddrey W. Disease of the liver, 8th ed. Philadelphia: Lippincott Williams & Wilkins, 1999. 8. Younossi ZM, Boparai N, Price LL, et al. Health-related quality of life in chronic liver disease: the impact of type and severity of disease. Am J Gastroenterol 2001;96:199--205. 9. Marchesini G, Bianchi G, Salerno PAF, et al. Factors associated with poor health-related quality of life of patients with cirrhosis. Eur J Gastroenterol Hepatol 2001;13:303--314. 10. Lenz E, Pugh L, Milligan R, Gift A, Suppe E. The middle-range of theory of unpleasant symptoms: an update. Adv Nurs Sci 1997;19:14--27. 11. Portenoy RK, Thaler HT, Kornblith AB, et al. The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 1994;30: 1326--1336. 12. Gralnek IM, Hays RD, Kilbourne A, et al. Development and evaluation of the Liver Disease Quality of Life instrument in persons with advanced, chronic liver diseasedthe LDQOL 1.0. Am J Gastroenterol 2000;95:3552--3565. 13. Younossi ZM, Guyatt G, Kiwi ML, Boparai N, King D. Development of a disease specific questionnaire to measure health related quality of life in patients with chronic liver disease. Gut 1999;45: 295--300. 14. Pugh RNH, Murray-Lyon IM, Dawson JL, et al. Transection of the esophagus for bleeding esophageal varices. Br J Surg 1973;60:646--649.
References
15. Prince MI, James OF, Holland NP, Jones DF. Validation of a fatigue impact score in primary biliary cirrhosis: towards a standard for clinical and trial use. J Hepatol 2000;32:368--373.
1. Anthony PP, Ishak KG, Nayak NC, et al. The morphology of cirrhosis. Recommendations on definition by a working group sponsored by the World Health Organization. J Clin Pathol 1978;31: 395--414.
16. Goh J, Coughlan B, Quinn J, O’Keane JC, Crowe J. Fatigue does not correlate with the degree of hepatitis or the presence of autoimmune disorders in chronic hepatitis C infection. Eur J Gastroenterol Hepatol 1999;11:833--838.
2. World Health Organization. 2000. Available from. http://www.who.int/mediacentre/factsheets/ fs204/en/ and http://www.who.int/mediacentre/ factsheets/fs164/en/.
17. Kumar D, Tandon RK. Fatigue in cholestatic liver diseaseda perplexing symptom. Postgrad Med J 2002;78:404--407.
3. Korea National Statistical Office. 2000. Annual report on the cause of death statistics. Seoul: Korea National Statistical Office, September 27, 2002.
18. Obhrai J, Yoshio H, Anand BS. Assessment of fatigue and psychologic disturbances in patients with hepatitis C virus infection. J Clin Gastroenterol 2001;32:413--417.
334
Kim et al.
Vol. 31 No. 4 April 2006
19. Poynard T, Cacoub P, Gatziu V, et al. Fatigue in patients with chronic hepatitis C. J Viral Hepat 2002;9:295--303.
26. Marotta PJ, Graziadei IW, Ghent CN. Muscle cramps: a ‘complication’ of cirrhosis. Can J Gastroenterol 2001;14:21--25.
20. Saadeh S, Davis GL. Management of ascites in patients with end-stage liver disease. Rev Gastroenterol Disord 2004;4:175--185.
27. Angeli P, Albino G, Carraro P, et al. Cirrhosis and muscle cramps: evidence of a causal relationship. Hepatology 1996;23:264--273.
21. Suzuki K, Nakamura A, Kato A, Yoshida T, Sato S. Mechanism of ascites formation and its management in liver cirrhosis. Nippon Rinsho 1994;52: 97--103.
28. Abrams GA, Concato J, Fallon MB. Muscle cramps in patients with cirrhosis. Am J Gastroenterol 1996;91:1363--1366.
22. Aslam N, Marino CR. Malignant ascites: new concepts in pathophysiology, diagnosis, and management. Arch Intern Med 2001;161:2733--2737. 23. Yeung E, Wong FS. The management of cirrhotic ascites. MedGenMed 2002;4:8. 24. Sivayokan T, Dillon JF. Cirrhotic ascites: a review of management. Hosp Med 2004;65:22--26. 25. Cho S, Atwood JE. Peripheral edema. Am J Med 2002;113:580--586.
29. McPherson CJ, Higginson IJ, Hearn J. Effective methods of giving information in cancer: a systematic literature review of randomized controlled trials. J Public Health Med 2001;23:227--234. 30. Tranmer JE, Heyland D, Dudgeon D, et al. Measuring the symptom experience of seriously ill cancer and noncancer hospitalized patients near the end of life with the memorial symptom assessment scale. J Pain Symptom Manage 2003;25:420--429.